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Friday, December 28, 2012

If you are initiated into the world of special needs parenting, there are some very unusual skills you must develop. One of these skills is an ability to evaluate and implement the growing list of new vitamins, supplements, important medications and therapies that may improve the quality of life for your child.

Unfortunately, however, in developing this skill, we become particularly vulnerable to the sales efforts of a legion of carpet baggers, charlatans and pharmaceutical drug reps.

As a parent of a child diagnosed with an incurable disease, there is a very convincing inner voice that whispers in your ear.

"You must try everything. If there is a chance to help your son in any way, you must take it. If you look like a fool it does not matter. There is nothing more important than the health of your child."

But staying abreast of the "latest new thing" is a daunting responsibility.

You must sign-up for countless yahoo groups, facebook pages and twitter feeds. You must join national organizations, befriend PWS experts and participate in conferences. You must read every blog and every comment ever posted about Prader Willi Syndrome.

If you are a special needs parent, the ability to jump on the band wagon is not just a frivolous pursuit to keep up with the Joneses, it becomes an important way of life, a means of keeping informed of important new treatment options for your child.

The tricky part is learning to discern which treatments are good medicine and which are nothing but snake oil.

In our PWS community, it begins with a "buzz word" that starts to reverberate throughout our desperate ranks.

Unusual words like CoQ10, carnitine, melatonin, vitamin B12 and PharmaNAC are ease-dropped into our daily conversations. Slowly at first, and then building in intensity until they are spread through our airwaves like viruses.

Of course, each of these products serve a different function. Some propose to give our children more energy, others will help them to sleep better, there are even those that claim they will help control appetite, anxiety or skin picking activities.

My job as a "good parent" is to evaluate them all or face the unwanted scorn of my fellow parenting colleagues and PWS professionals.

So, in an effort to remain in good standing within my small community, I try them all.

I must admit, at times I feel like a desperate and gullible mother, bringing her child to the latest wild witch doctor who waves his magic feather wand over my suffering child and proclaims with spiritual reverence and mad man intensity....

"Be gone evil spirits, be gone!"

I have spent countless dollars on countless boxes of vitamins and supplements that now sit untouched in the dark confines of our bathroom medicine cabinet.

But I have also discovered important therapies and treatment options that have made a significant difference in the quality of life for my son, treatments such as growth hormone, abilify and provigil, medications that have enabled my son to overcome obesity, manage anxiety and sharpen his cognitive focus.

So, I will continue my quest as the ever-evaluator of snake oils.

I will buy every magic pill recommended by my fellow comrades-in-arms.

I will fulfill my role as a "good parent" until one day perhaps we will find a legitimate cure that will enable my son to live a happy and healthy life, free from the effects of a terrible disease.

I will never stop trying to find a cure for my child.

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Lisa Peters, an ever-evaluator of snake oil, is also a mother of two children and author of the blog, www.onalifelessperfect.blogspot.com. To read more about our family adventures, please come visit.Thank you for reading.I would like to wish all of our readers a very safe, healthy and happy new year!

Tuesday, December 25, 2012

I've been writing here for a couple of Christmases now, which means my day to post is always the 25th. I post here every month with confidence, yet I've found myself on this day with an unneeded amount of pressure on this day, Christmas.

I don't know what my problem is, but if I had to guess it's the pressure of wanting to write something profound on this religious holiday (without sounding religious). Something hopeful. Something that is important to say about the past year, something that says, we as parents in this special club know a lot that typical parents don't. I really just want to express my appreciation, my gratitude.

I want to say thank you to the community of un-typical parents and caregivers for always being so open and loving. Thank you for being so kind and giving. Thank you for coming to the rescue of so many over the past months. Thanks for advocating for your kids making it easier for others behind you. Thank you smiling that knowing smile to another parent you can tell is just learning what their child's disability really means for their life. Thanks for helping the parents and caregivers behind you know they can do it. That they have what it takes. Thanks for fighting the fight because someone has to do it, but not everyone can. Thank you for making me feel welcome in a world that sometimes makes me feel unwelcome.
Perhaps my friend, Rob, said it all here in Christmas Eve on the Island of Misfit Toys and I'm just trying to echo what he's said. Thank you, thank you.

Merry Christmas to those that celebrate, Happy Tuesday to those that don't, and I wish peace and understanding to us all.

Thursday, December 20, 2012

This has been a week of much darkness for our nation. The lives of 27 innocents - many of them young children - were lost in a single act of unspeakable violence. The individual who perpetrated those very acts was someone who is reported to have been on the autism spectrum, and as a result we've seen the media and the public latch on to the misguided and incorrect idea that there is a link between autism and planned violence.

I could rail on about the way in which is it wrong to compare my child to another human being - particularly one who is responsible for such a heinous act - simply on the basis of a shared diagnosis, but that doesn't accomplish my ultimate goal. I've already addressed that in a post yesterday titled Simply Evil, but I want - I need - to move on from that place. Pointing out the misconceptions only goes so far. What I want is for the world to see my boy for who he is, not who they imagine him to be.

In order to break down the ignorance, bigotry, and misconceptions about autism that are flourishing in light of such tragedy, we need to show the world just how wonderful our children truly are. We need children like my son, like your daughter, like your children, to be the faces that people see and think about when they hear the word "autism". We need to steer the world away from their preconceived notions of autism and show them what autism really is.

It's time to bring the world into the light.

I would like to personally introduce you to my boy. He's almost 4 years old (a fact that blows his mommy's mind every day) and he has multiple disabilities, with the primary one being autism.

My boy loves the PBS show Super Why! His favorite toys are magnetic letters, his iPad (he loves his Thomas and Friends and Super Why! games), and bubbles. He could pop bubbles all day long and gleefully squeals "More!" to ask for yet another shower of bubbles from either his father or myself. While he doesn't eat many foods, he does love McDonald's French Fries...just like every other 3-year old in America.

Still in the midst of his "babyhood" - which autism has prolonged in a way that this mama has learned to appreciate - he wakes his mama up each morning with an adorable string of babble over the baby monitor. When I enter his room, he is laying in his crib clutching a red sleep sack and looking up at the ceiling with a smile. Seeing his smiling face greet me early each day is truly the best part of waking up.

He radiates joy when he enters a room. I tell people often that my boy does happy with his whole body. When he gets happy, he raises up on his toes. He bounces lightly in place. His hands flutter and flap, sometimes so vigorously that I think he might take flight. A smile spreads across his face from ear-to-ear as he engages in this bursting forth of energy and happiness and light.

He works harder than most children his age have worked in a lifetime. He spends hours each week in speech, occupational, and physical therapies and special education to accomplish what other children do so easily. Would you know, he does it with a smile most days! He puts forth so much effort each and every day. As a result, each little victory - each jump, each word, each giggle - is a precious treasure in my eyes. I couldn't be prouder of every single thing that he does.

And the words! I hear people with typical children tell me that they just wish their children would be quiet, but I say never. Let my boy speak and speak and speak. Each word has been hard fought for and each word is one that I thought I might never hear. Each word spoken in his tiny high-pitched voice is simply music to my ears. I never tire of those little words, no matter the meaning.

My angel has a legion of therapists, teachers, aides, and other providers - in addition to a very proud Mommy and Daddy - who think he is one of the greatest people we have ever met. He is sweet, adorable, and full of light and beauty and all that is good in this world. To me, he is love personified.

There is not a violent bone in his body. When another child takes a toy from him or hits him, he just stands there silently, looking at the ground. He doesn't retaliate. He lets the temporary assault roll off his back. He simply turns off for a moment or two and then moves on. No monster there, just someone who wouldn't harm a fly.

Just someone who is the heart and soul of his mama. Just a little boy full of joy and happiness and all things good. Just a little guy who is all boy.

Just a beautiful little boy with autism.

He is exactly what we should think of when we think of autism. We should think of hard working children who need support to accomplish great things. We need to think about those smiles, that outpouring of joy, and the brilliance that is each of our children. We need to think of all of the good and decent and wonderful things that each and every one of these children bring to our lives.

So, I ask you to join me. Share your stories below - either by attaching a link to a blog post of your own or by providing a short description - and introduce your children to the world. Help the world see and understand and know our children to be the wonderful little people that they really are. Take a look at the stories shared here to get a true understanding of the beauty and diversity and light that exists on the autism spectrum.

Let's see if we can make this happen. Let's see if we can band together to paint a picture of how wonderful our autistic children are. Let's make it happen and let's change the world.

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Jeanie is a former engineer turned stay-at-home wife and mom to an amazing 3.5-year old little boy on the autism spectrum. After her only child was diagnosed at 24 months with autism and an alphabet soup of special needs, she began to write about life parenting a very young child with special needs with honesty, optimism, and as always, a touch of humor.

Wednesday, December 19, 2012

Have you ever been in a situation where you know what the right thing to do may be, but you just don't want to accept it? You know you need to....there's no choice in the matter.....but you just want to convince yourself that everyone is wrong and you can go about doing everything in just the same way as you've been doing things? That's what happened to me in the last few weeks.

My daughter (Ballerina) is a handful. I'm not sure how much is directly related to her alphabet soup diagnoses (ASD, ADHD, POTS), and how much is just HER. It all seems to come down to one thing.....she has to be FIRST. She has to win every race, be the person to open every door and turn off every light, you name it. Line Leader is her favorite job in her kindergarten class (and she's not alone in that one) and when you ask her what her job for the week is, that is always how she will respond.

All of these things have their annoyances, yes, but there's really nothing WRONG here (in my mind). Yes, there will be tantrums when her older brother (Big Brother) manages to do something first, but we address those and are trying to teach her that everyone deserves a turn at being "First". But she's taken this to a new level. And unfortunately, she's done this in the parking lot.

Every day, I pick my 3 children up from the same school. In order to make this process as safe and simple as possible, I make an effort to get to the school early so that I can park in a spot that doesn't require any street crossings. I'm not always successful, but most days, it works. And most days, it's the same parking spot. I start in the kindergarten courtyard where I pick up the twins. Sometimes this goes smoothly, sometimes not. But we do it every day and we have found a certain "routine" for this activity. Then, we head over to the main entrance to pick up Big Brother (2nd grader, who is dismissed about 5 minutes after the kindergarteners). As soon as Big Brother joins us, the race is ON.

Ballerina has decided that she needs to get to the car first. She goes running off and Big Brother runs after her. Big Brother is doing this on my instructions, to help ensure that Ballerina does NOT run into the parking lot with the oncoming cars. But Ballerina just sees Big Brother taking chase. And Ballerina's twin brother (Music Man), who has a recent history of elopement, has to be a part of the game by body dropping so that it's impossible for me to go racing after Ballerina myself.

The school staff had watched my predicament (and has stepped in to help) for a couple of days. When they realized that this was something that wasn't going to go away, they decided to REALLY step in. A couple of days later, the new pick-up/drop-off routine was established. Ballerina and Music Man are now picked up for school directly from my car in the traffic circle by one of their teachers and then returned there to me at the end of the day. When they get back to the car, they earn a reward (small handful of Goldfish crackers) if they behave appropriately.

Don't get me wrong.....I am SO grateful that the school jumped in and took the initiative with something I don't know if I was comfortable asking for their help. But when they first proposed doing this, the first thing I wanted to do was scream "ABSOLULETLY NOT!". They already stick out with their odd behaviors (Music Man) and their constant shadowing in a mainstream classroom (Ballerina) -- this was just going to be another way in which they were different from the rest of the school. But I knew I needed the help. I knew that the suggestion was coming from the right place. And I knew I couldn't do this alone, and I couldn't risk the safety of my children because of my own personal pride.

So, this is what we do every day. And every day, I see the other kindergarten parents, picking up their children at the kindergarten playground. But Ballerina and Music Man come straight to me. And I know they're safe. After what happened last week in Connecticut, it made me realize that it's these little things that we need to put aside because our children's safety has to be put above all else.....especially this Momma's pride.

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My name is Ilene and I'm a happily-married SAHM raising 3 amazing children and a dog. My oldest child is 7 and I have a pair of almost-6-year-old girl/boy twins who were both identified as "on the spectrum" at 26 months (Autism diagnosis came about 4 months later).Since then, I have been doing all I can to learn about Autism and to learn ways that I can help my children as well as others who are walking this same path. I am a self-declared "Parent Advocate" and run a Facebook page (We Care About Someone With Autism) as well as blogging regularly (My Family's Experience With Autism).I hope you enjoy our stories.

Tuesday, December 18, 2012

It's a little disorienting to have a child with special needs, that doesn't grow up at the rate of their peers. It's hard to see how time has marched on, when you have a sixteen-year-old that still insists on visiting Santa so he'll know what to bring him on Christmas. Who still squeals with joy when the Advent calendar comes out, and when the $.99 Trader Joe chocolate one comes home. Who can't wait to see their favorite ornament (a little bear) when we decorate the tree. Who talks about the lights, the stockings, how he loves our tradition of not eating breakfast until after we open the presents, who can't sleep at night he's so excited, and can barely get through the school day with all the anticipation.

I recently took Rojo to visit Santa, and blogged about my angst over that. As with most things, they don't turn out to be as bad or as great as we build them up to be in our heads, and visiting Santa was no exception. There were a few minutes of awkwardness and self-consciousness on my part, but zero on his. It's my own fragile ego that's the problem, not his lack of one. Of that, I am certain. One of these days I am going to remember at the time, that he is here to teach, not the other way around, and just breath through the moment with gratitude for the lesson(s) he's imparting.

I realize not everyone reading this blog celebrates Christmas, and that there are readers from all faiths and no faith at all. If Rojo has taught me nothing else, it's that none of that matters. What we label ourselves, what we believe, who, what and how we worship, none of it makes a lick of difference. Love is good, and that is something everyone can agree on. Rojo is here to teach "just" that. Love. Pure, unconditional, simple, innocent, everlasting and much-needed love.

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Carrie is a parent and advocate of a
child with special needs and even more special gifts. She blogs at
http://carrielink.blogspot.com/ where this is pretty much her favorite
topic.

Sunday, December 16, 2012

"I wouldn't be shocked," I said to a staff member at the Chicago Public Schools on Friday when news broke that Adam Lanza had also killed his mother, "if I am one day killed by my son."

I've spent the weekend replaying that conversation, in disbelief that I've said this out loud to someone other than my therapist who hears it nearly every session. But I'm not the only member of my family thinking this. Just today, an immediate family member asked me, "Do you think this is something your son could do someday?"

Our eyes met, knowing the answer.

My eight-year old son has seven locked-down psych ward hospitalizations under his belt for being a danger to himself and others (namely, his mother). He has fought his way through life so violently that he has endured multiple injections of Haldol (a chemical restraint used in prisons), physical restraints to a bed, physical restraints by six armed guards at once, hundreds of physical restraints by therapists and counselors, medications that could tranquilize an elephant but somehow can't always tranquilize him, and excruciating time wailing in the so-called "Quiet Room" in the psych ward.

He is a child who snaps, who can become clinically psychotic and utterly dangerous.

But this is only one small, albeit loud, aspect of my beautiful child. He is also a child who took the candy canes he received from St. Nick to school so that he could share them with his classmates. He is the child who loves his brother so much that he offered to share his bedroom, even though there are two. He is the child who looks out for kids that bullies pick-on, and stands up for what is right. He is the child who hates imagining the day his parents are dead and gone because he loves us so much. He is the child who pines for his friends who no longer attend his school. He is the child with the purest of hearts, but a mis-wired brain.

"God gave him
to us," said my family member. "He is our responsibility. It is our responsibility to him and to
society to make sure this will never happen."

I looked at this family member all sorts of funny. As if I, or anyone, can stop a person in the height of a crazed, violent episode! Having been simultaneously the victim and the "first responder" during raging, dangerous situations, this idea that somehow it is my responsibility to ensure peace seems audacious at best, and utterly impossible in reality.

But it is just this sort of thinking that will allow another Adam Lanza to strike again.

It is my responsibility to keep my son subdued as I have managed to do these many years. And do you know what? It's your responsibility, too.

Rather than insisting that we mourn and not talk about gun control today, we must talk about how to keep firearms and other deadly weapons from the hands of the mentally unstable...not only for their safety but for our own.

Rather than not uttering Adam Lanza's name so as not to provide him any more infamy, we must talk openly about how mental illness manifests in people...not only for their safety but for our own.

Rather than distancing ourselves from "the crazy people" in hopes that they don't bother us, we must understand how to help them...not only for their safety but for our own.

Rather than imprisoning people who are mentally ill, we need to provide them effective treatment...not only for their safety but for our own.

Rather than stigmatizing people who see therapists, we need to positively support them for getting the help they need...not only for their safety but for our own.

Rather than bashing psychotropic medications and focusing on their negative side effects, we must encourage people who need these medicines to take them...not only for their safety but for our own.

Rather than dismissing alternative medicines as quackery, we need to praise people for searching for help...not only for their safety but for our own.

Rather than secularizing the daily lives for those who are faithful, we need to foster the ideals of the Divine...so that all of us who pray may lift up those who need it most.

Imagine, for a moment, being the parent of a child who lost their lives at the hands of a shooter. It is a no-brainer that you would give away all your worldly possessions just to have your child back. If these lives are so precious to us, then we must be willing to help fund treatment and research for mental illness. Why not take that extra $5.00 in your pocket that you'll spend on a cup of
personalized coffee, and give it instead to a charitable organization serving the mentally ill?

As for my responsibilities this week, I'm meeting with a special needs attorney, an at-home behavioral consultant, my own therapist, my son's therapist, and a state agency that provides support for those with mental illness...all so that I will NEVER be Adam Lanza's mom.

Saturday, December 15, 2012

I had another post ready to go, but I'll save that for next month. Today, I just want to tell you to go hug your kids. Spend the day together. Get out and have fun. Find that extra bit of patience you didn't know you had.

Happy Holidays to all! Cherish one another. Tomorrow is never a promise.

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Jen is mom to Katie (HFA/Dyslexia) and Ben (boy). She lives with her husband, children, and too many animals, in small town New England. You can find her blog at Still Looking Up, follow her on Twitter @JenTroester, and check out her Facebook page HERE .

Friday, December 14, 2012

I thought about writing about how we've been celebrating Hanukkah. What it is like to celebrate the holiday with one child with special needs, and one typical child.

I thought about writing about some of Moe's recent progress. About our search for an AAC device for him, or about visiting several autism schools, or the time I got into a spat on Facebook with an autistic adult.

I have a lot to write about.

But today, I, like much of the nation, sat stunned at the news of, at latest count, twenty children shot and killed in a Connecticut school. The horror is unfathomable. I have had tears in my eyes all day as I think of the horror of this day.

We parents of special needs kids know especially how vulnerable our children can be. They suffer abuses at the hands of those who are meant to care for them and teach them. But a bullet does not discriminate between special needs and typical child. When a gun enters a school, every child is vulnerable.

And so today, I come here not to write about my child with special needs. Instead, as a parent and a human being, I think of the families in Connecticut with the deepest sorrow. I hope someday they are able to find peace. I hope we learn something from this tragedy.

Wednesday, December 12, 2012

Yesterday, Dr. William House died at the age of 89. Although we never met Dr. House he has a profound impact on our daily lives for he was the founder of the cochlear implant - a device that allows many people who are deaf to hear. My daughter, Emma, is deaf and is a bilateral cochlear implant (CI) user and they have changed her life.

When Dr. House started working on CIs the medical community thought it couldn't be done, he suffered from harsh criticism from his peers and was encouraged to abandon his work. Still, he persisted and succeeded when the FDA approved the first CI in November 1984. Sometimes I wonder what our life would be like if Emma couldn't hear. I know it would be drastically different than it is today.

When Emma first started using her CIs, while her brain was trying to make sense of the sound input, the first major change we saw was how she started to really move her head around. If you can't her what is behind you or in the other room or what is going on off to the side and CP makes it hard to lift - let alone move - your head there would be little reason to move it around. Once Emma could hear she started looking around her more, curious as to what was going on, and we noticed a significant improvement in her head control. We knew CIs would give her access to sound, but didn't realize that it would have such a positive impact on her physically and were overjoyed that it did.

Unable to use sign language due to her severe cerebral palsy (CP), communication options would be very limited if Emma couldn't hear with her CIs. In her early days we took classes in ASL, formed relationships with Deaf individuals, watched all the Signing Times vidoes and did a lot of signing with Emma. She was one year old before she received her first implant and it was important to us to give her access to language during that time. We also wanted her to know some ASL in case her implants didn't work well. Outside of her own version of all done, though, her CP makes it very hard to imitate signs so we eventually phased out the signs in favor of more oral language as her use of her CIs improved.

Today, Emma lives in an oral world where understands everything people say to her thanks to her CIs. She talks through an eye gaze augmentative communication system since her CP makes it very difficult for her to speak. Her CI's made this possible.

We are forever indebted to you, Dr. House, and are thankful that you went on to prove all those who said it couldn't be done wrong.

Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas. She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy. Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.You can read more at howlifehappens.blogspot.com

Tuesday, December 11, 2012

This is the third December full of mucus. I’ve probably had
many more winter months full of snot, but the last three have been particularly
distressing. I don’t like mucus; I have
a very strong gag reflex.This time last year, Sylvie had just returned
home from the hospital from what would be a long and tedious struggle with a
chronic upper respiratory infection all winter.This year we’re prepared with two suction machines and an oxygen tank,
which we’ve unfortunately been using with great gusto. Sylvie’s papa is a
saint; he painstakingly administers Sylvie’s liquids by mouth one 10ml syringe
at a time.She no longer sucks on a
bottle, and even though her doctor would prefer Sylvie was using a g-tube, we
continue to feed her orally.She’s had
enough energy to smile at us in the morning, and she still enjoys bath time at
night with her sister.I’m not the
praying type per se, but I have been going to bed each night, as I listen to
Sylvie’s labored breathing, hoping I wake up to see her smiling one more
day.

I haven’t read Anne Lamott’s Help Thanks Wow yet, although I’m following her various speaking
engagements around the country to promote her new book. Yesterday she posted her own favorite passage:

Love
falls to earth, rises from the ground, pools around the afflicted.Love pulls people back to their feet.Bodies and souls are fed.Bones and lives heal.New blades of grass grow from charred
soil.The sun rises.

It seemed an appropriate passage to meditate on after
Sylvie’s pediatrician and case manager came to the house for a home visit early
yesterday morning.It was just like in
the olden days, when docs made house calls for the elderly and sick.We talked about hospice and contemplated Sylvie’s
ongoing palliative care needs. Sylvie giggled when she had three stethoscopes
placed upon her chest, nestled in her big comfy bed in her own room in our own
humble house.It’s a much better place
to be than in a hospital bed connected to IV drips.Bodies
and souls are fed when they are in a place that feels like home.

Last year when Sylvie got home from her first extended
hospital stay, a secret Santa arrived at our door.We never found out who the man was, or for
whom he was delivering presents. The delivery happened so fast—and the man disappeared
before explaining—it took us a few minutes before we realized we were just blasted
with kindness.That small act of compassion
pulled me back on my feet.Each December
for the last 4 years, I’ve hoped for Sylvie’s twin sister that Sylvie will live
at least until January.Just get us
through the Christmas with some semblance of peace and goodwill to all.Just get us through the New Year. Just get to
the girls’ next birthday.And then
BAM!we make it through another
year.And the sun rises. And we continue
to be bombed with kindness.Thanks!

When Kirsten isn’t grading final exams andpapers as a professor of Communication
Studies at the State University of New York, she bakes holiday cookies with her
6-year old (soon to be 7) twin girls.

The road to adoption is often paved with potholes. Just when you think the ride is getting smoother you hit another one.

It started out when I was pulling out Cary's book. I keep a 3 ring binder with a calender for appointments, folders for information, notebooks, and various needed items. I was going through reports hoping to weed out and finally pitch some stuff when a few random sentences on Cary's original paperwork caught my eye.

The infant was screened for hearing. Results were inconclusive. Recommended follow up on this is advised.

Say what??? Come on now, she hears just fine. She is blind. She absolutely can't be deaf. Can she? So I immediately got on the phone with her social worker and started gunning out questions. It seems that Cary failed her newborn hearing test. She was supposed to go in with her previous foster mom but true to form foster mom did not take her to her appointment. For those that don't read my other blog, the foster mom from May-September has not taken her to over 12 necessary medical appointments. The social worker also likes to say that it is "no big deal". But I fell into that trap once about her diabetes and will not be stupid enough to do it again, thank you very much.

So I started making calls. The place where she was supposed to go was rather peeved. Even if I am her new mom the old guardians didn't show up so they were not going to make it easy on me at all. So after going round and round I did what any mature adult would do. I hung up on them. Then I sat down and threw a pity party. After a few sniffs and tears I decided that I would get her hearing tested elsewhere. I called up the Virginia School for the Deaf and Blind. A wonderful woman took my call, answered my questions, and we go on Friday for hearing testing. I am super excited! If I could cherry pick anyplace to send Cary this is the school. Getting her in for hearing is getting my foot in the door for much needed vision services.

So we hit a pothole. But we survived. Cary CAN hear, but her hearing may be a bit fuzzy. These tests will help us determine that. Cary is a strong resilient child and even with so many missed appointments is gaining ground daily. If she can do it so can I!

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Amy Fields is a stay at home mom who is slowly transforming her house into a Montessori classroom so she can educate her two special needs children. You can follow her at Many Kinds of Families.

Sunday, December 9, 2012

We managed to light candles, play dreidle, buy and decorate a tree, and go to a birthday party this weekend.

On the one hand, our way of doing these things probably did not resemble the majority of other people in the general population's ways. There were shouts of frustration and melt downs and dramas, time crept along slowly in spurts and there was plenty of mess.

And yet it was our most successful holiday weekend as a family. Who knows, maybe by 2015 or 16 we will find a groove.

I think I'm going to need some eggnog, but I am determined to keep trying my best to remain a hopeful parent in 2013.

Wednesday, December 5, 2012

Nick is at school; our special little place that was created for a small number of children who don't fit into mainstream schooling. They break up this Friday and we are in for a long lazy summer. Not so long ago, the prospect of having a long holiday without any respite filled me with dread. I really and truly disliked holidays.My son doesn't play with toys, ride a bike or use a skateboard. He has no interest in lego, cars or ball play. He is unable to write, let alone draw. He will not take himself off to the swing or trampoline. My son is severely autistic with extremely narrow interests. As with most kids, he loves screen time.... but, in my heart of hearts I don't feel good about allowing him to spend all of his waking hours during the next six weeks, stimming on the computer, iPad, TV or stereo. Just reading the above paragraph makes me feel a little nervous. Am I going to be able to get through the summer until next term starts?I have been thinking to myself that I need to make a plan... or two! I am so thankful for my dogs as they will give us an excuse to get out of the house every day. My boy is also becoming more interested in them and has started to be the 'ball thrower'... We have a pool so I will just have to get over my angst at exposing my wibbly wobbly bits squished into a costume. Nick is unable to swim (just can't get that co-ordination right!), however, I really need to spend some time with him and help guide him to be comfortable in a large expanse of water.Oh yes, no doubt I can find an excuse to go shopping for some essentials. Gone are the days that I couldn't take Nick anywhere, therefore grocery shopping will be a breeze for us!Nearly forgot my need for a daily cappuccino! Another opportunity to get out and about....I also need to put some thought into the daily chores, cooking and all that other stuff that needs to be done around the house and in the garden. Woohoo, Nick is going to be a busy boy!!Phew, I am exhausted already! Hey, Nick.... how about a little bit of *me time*? Screen time anyone?I remain hopeful that we will have a happy and productive holiday.

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Di is the mum of a two amazing teenagers, although she is only allowed to blog about the youngest one!! You can find her over at Bright Side of Life.

Saturday, December 1, 2012

For those of
you familiar with our journey, you know that after my child’s transplant I
thought we were home-free.Although I
didn’t expect 7 hospitalizations since then (hence skipping some monthly columns),
I’m still grateful.

Doctors have
literally saved my daughter’s life on multiple occasions.I’m thankful that there are not one but two
local hospitals in addition to the children’s hospital we use.We went to all three within 2 weeks.Families need to have backup plans.When we had an emergency, we went to the one
5 minutes away.When my daughter was in
pain and we were concerned it could become an emergency, we went to the one a
few minutes further out since they were a satellite of the children’s
hospital.When we knew we had time, we
drove the 1 ½ hrs. (sometimes 2 ½ if traffic) to her “regular” hospital.

In keeping
your child safe, families should know that if they don’t think they can make it
to the usual doctors, other local hospitals can stabilize your child then
transport to the regular hospital your child uses.We had 2 ambulance rides this past month but
it was safer than trying to bring her ourselves.

Now that
this has happened (twice), I’m trying to set up something where the local
hospital can consult with the children’s hospital so she can stay local if
possible (also much easier for us physically and financially to stay home
instead of staying out of state and for family/friends to visit).You need to check with your current doctors
to make sure they can consult with whichever local hospital (again, ours is a
satellite so easier).Then set it up
locally.I checked to see which hospitals/specialists
were recommended (see resources) and found that they did have in-patient privileges
at the hospital.I also gave those names
to my daughter’s “regular” doctors.

Another
thing that happened as a fluke was I called my daughter’s pediatrician just to
tell him she was hospitalized (again) and as he has privileges at the local
hospital he offered to facilitate a discussion between the local hospital
specialists as well as pediatrics to ease transition.Although the pediatrician is really her
“primary care physician” who knows all her medical care overall, I hadn’t
realized I could ask for help in the hospital collaboration.

Lastly, I’m
grateful for the little things.Although
my child doesn’t have much energy or strength, I don’t want her just watching
TV, iPad, videogames all day - I want to spend more time with her.Even if we can’t take our around the block
walks, we can go to the corner & back.It’s a start.We can read
together.We can do puzzles.We can have word search races. We can listen
to music or if she’s up to it play instruments.We can make holiday wish lists and shop online.And yes we can play on the iPad as long as
it’s a 2 person game.

When she
came home, she was falling asleep at 7 p.m.The past few days she’s been getting closer to her regular 10p.m.
bedtime.But even if it’s later or the
middle of the night, I no longer get annoyed if she’s keeping me awake talking
loudly, shouting Pokemon attacks, laughing, or singing on the other side of the
wall when I’m trying to sleep.After
all, she’s still here.

Lauren Agoratus is a parent/advocate who serves
as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center
of children’s healthcare” at www.familyvoices.org.She also serves as NJ Caregiver Community
Action Network representative supporting caregivers across the lifespan for National
Family Caregivers Association in a volunteer capacity at www.thefamilycaregiver.org.

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Our kids have all kinds of special needs, mild to severe. Some of us grieve the loss of our children. We do the very best we can, which often takes a toll on us. We come here to share our feelings with other parents who understand. We're searching for every parent of a child with special needs. Welcome!